A meeting to raise awareness of the challenges facing the 400 people living with multiple sclerosis elicited just five positive responses from the 80 public representatives invited to attend.
The information meeting for city and county councillors as well as Oireachtas members was scheduled for yesterday (Friday) morning in the city with up to 15 MS sufferers planning to show up to outline measures which the local and State Government could implement to make life easier with their illness.
“The central aim of this event was to make public representatives more aware of MS and how it impacts on those diagnosed and their families.
“We wanted to communicate how they can help improve the quality of life for people with MS through their role as an elected public representative,” explained Aidan Larkin, regional coordinator for MS Ireland.
“The response we got back is kind of shocking. We’ve had positive responses from five and five others who said they’re unavailable – that’s out of 82. We have people who would have had to make a real effort to be here, people with significant physical issues and we didn’t want to waste their time.
“Who are these people representing, if not the estimated 400 people aged between 15 and 90 who are living with this condition in Galway?
On Tuesday the decision was made to cancel the meeting and MS Ireland sent out an email to councillors, TDs and senators lambasting them for their pathetic response.
The small but vocal group of people who agreed to make their case planned to stick to three or four key messages.
Parking is a serious issue for MS sufferers as many have serious mobility difficulties. With the advent of the public bike scheme many of the disabled parking spaces have disappeared or moved to less convenient locations.
Nationally, a mobility allowance of €270 a month to assist people with transport was removed a year ago and never replaced as promised with an alternative transport scheme.
“Given that 54% of people with MS don’t work or have had to take early retirement due to cognitive issues or fatigue or loss of mobility, that cut really hurts,” insisted Aidan.
The plight of one Galway sufferer hit the headlines last month when Rosaleen Rafter from Kileeneen outside Craughwell revealed that she was being denied medication that cost a tender a day which was vastly improving her quality of life.
The former NUIG administration worker’s campaign to get Fampyra included on the long-term illness scheme so that it will be funded by the HSE has so far fallen on deaf ears.
After taking the drug for two-and-a-half years as part of a clinical trial, she must now cough up the €275 a month cost herself in order to maintain her independence, which is proving very difficult on a pension.
The manufacturer, Biogen, submitted a revised application to the National Centre for Pharmaco-economics (NCPE) for it to be included on the scheme last July and the HSE said it was currently considering the outcome of those talks.
“We understand that 60% of people with MS would be suitable to try Fampyra and an estimated 30% of those would likely be responsive.
“That’s not a huge group but it would be very significant for that cohort who could get some relief,” explained Aidan.
“We would have thought that public representatives would like to be informed about these types of issues.
“For a large number of MS sufferers it’s not their condition that is the most challenging; it’s their environment.”
Bikers do their bit to mark anniversary of blood service
This year marks the tenth anniversary of Blood Bike West, and the big birthday was marked in style with a sun-drenched afternoon at Galway Plaza’s Bike Fest West.
Galway stuntman Mattie Griffin was the headline attraction; there was face painting, games, plenty of ice-cream – and hundreds of motorcycle enthusiasts and families.
The birthday celebrations kicked off with a 160-strong motorcycle spin around the Galway countryside, raising well-needed funds for the volunteering efforts of Blood Bike West.
As a 100% volunteer-run and funded organisation, donations are vitally important for Blood Bike West to continue operating their medical transport in the West of Ireland.
Since its inception in 2012, demand for their volunteers’ services continues to grow: collecting and delivering all manner of urgent medical items regionally and nationally, such as bloods, breast milk, medicines, scans, and equipment.
In 2021 alone, Blood Bike West delivered 983 urgent medical deliveries throughout the country.
As part of Galway City Councils Community, Blood Bike West undertook to operate a 24/7 service, including 165 medication deliveries from pharmacies to the self-isolating and vulnerable during the COVID-19 lockdowns.
Since Blood Bike West’s inception in 2012, this increase sees the ongoing need to replace and renew their fleet of motorcycles.
Their motorbikes, Madison, Heather, Margaret, and newly inaugurated bike Cara, are regularly seen on Galway roads, delivering consignments to and from local and regional hospitals.
Park fun to mark Africa Day
On Saturday next (May 28) in Salthill Park, Galway’s African community invites people to join them in a celebration of culture as part of the national Africa Day celebrations.
Africa United Galway, emerging from lockdown and having hosted online festivals for the past two years, will be delivering a family fun day event.
Africa Day 2022 will reinforce a collaboration between Africa United Galway and Galway Africa Diaspora, Shining Light Galway and GoCom Radio (broadcasting live), who have worked to create a festival that will showcase Galway as a city of culture.
Among the performances on the day will be Afrobeat dancer Lapree Lala of Southside Moves, who will show how to dance in African style; Elikya Band will be bringing indigenous African Congolese music; The Youth Performances will be displaying their talent in rap, singing, speaking, and dancing and for the young at heart.
Galway Afrobeat performer Dave Kody will get the crowd moving and there will be poetry through spoken word and cultural displays. There will be a photo booth and face painting and everyone will get to have a taste of African cuisines.
In the spirit of inclusion and integration, The St Nicholas Collegiate Church Parish Choir will be presenting a special African performance as well as a feature presentation by the Hession School of Irish Dance, who will be presenting the famous Riverdance.
Also organised is a football friendly between the African community and An Garda Siochana.
The Mayor, Colette Connolly, will officially be opening the event with a keynote speech and several African Ambassadors are expected to be present on the day to reinforce the culture, beauty and strength of Africa and support for its people.
Africa Day is sponsored by Irish Aid and supported by Galway City Council.
Domestic Violence Response recorded highest number of clients in 24 years under Covid ‘shadow’
BY TIFFANY GREENWALDT-SIMON
A domestic violence support charity in Galway has recorded its highest number of clients in 24 years – “under the shadow” of Covid-19.
Domestic Violence Response (DVR), which is based in Moycullen, also reported its highest level of counselling support sessions in its 2021 annual report published last week.
The charity saw 136 new clients in 2021, and a total of 266 people utilised its services. It also saw a significant increase of return service users.
The support service also provided 51 nights of emergency accommodation through a partnership between Airbnb, Safe Ireland, and Women’s Aid.
Elizabeth Power, Coordinator of DVR Galway, said: “Our 2021 annual report highlights the stark reality of the level of domestic violence in Galway. Under the shadow of Covid-19, DVR recorded the highest number of clients in our 24-year history and delivered the highest number of support services.
“Our staff noted increases in the level of worrying and harrowing experiences of control and abuse. The trauma of these experiences will live with our service users long after Covid-19 fades into memory.
“While Covid-19 restrictions are behind us, domestic violence continues to be present in hundreds of homes throughout Galway.
“As we move through 2022, we will continue to provide our much-needed services to women and men throughout Galway, with an extensive counselling support and advocacy service and a number of new initiatives including a partnership with the HSE which will be launched in the coming months.”
For more, read this week’s Connacht Tribune.
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